Thiamine Deficiency and Dependency Syndromes: Case Reports

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thiamine dependency
I have been studying thiamine metabolism since 1969 when I published the first case of thiamine dependency: Intermittent cerebellar ataxia associated with hyperpyruvic acidemia, hyperalaninemia, and hyperalaninuria. The case involved a 6-year old boy experiencing recurrent  episodes of cerebellar ataxia (a brain disease resulting in complete loss of a sense of balance). These episodes, occurring  intermittently, were naturally self-limiting without any treatment and were triggered by inoculation, mild head trauma, or a simple infection such as  a cold. In other words, his episodes of ataxia were repeatedly initiated by an environmental factor. I have called each of these variable factors  a “stressor”. Our studies showed that one of these stressors would unmask the true underlying latent thiamine dependency, falsely giving the impression that the stressor was the primary cause. This may be the principle of post vaccination disease in some cases. It may also be too easy to explain symptoms arising from trauma or infection as primary cause. These recurrent ataxic episodes were prevented from occurring by giving him mega-doses of a thiamine supplement.

Cerebellar Ataxia of Metabolic Origins?

When ataxia, as in this child,  or other symptoms, occur intermittently, as they did in many other patients whom I would treat across my career, it is difficult to identify the true cause. The studies performed by neurologists, neurosurgeons and others inevitably would be  normal, causing diagnostic confusion. In other patients with less serious symptoms, they are considered to be somehow feigned or of psychological origin. Symptoms that appear and disappear in a seemingly random manner and are not supported by conventional laboratory data are often explained this way. Please be aware that ataxia should never be regarded as psychosomatic. The point is that less serious symptoms that cause deviant behavior may not be recognized as biochemical changes in the brain.

With the present medical model, it is difficult to understand and accept that a stress factor can initiate the symptoms of a metabolically caused disease that has been relatively innocuous or silent until the stress is imposed. Let me give you another example.

Loss of Consciousness, Edema, Joint Pain: Rheumatic Disease or Metabolic Disorder

Since I was working at a multi-specialty clinic I was sitting having lunch with an ear, nose, throat (ENT) surgeon who knew of my interest in sudden death in infants (Treatment of threatened SIDS with megadose thiamine hydrochloride). He had been called to put in a tracheostomy to a middle-aged woman who had suddenly stopped breathing. Unlikely as it sounds, he suggested that I should go and look at the situation unofficially.

In the hierarchy of specialization, a pediatrician is not supposed to know anything about adult conditions, so I was not welcome. Because the internists who were taking care of her were rheumatologists, it was considered to be some kind of rheumatic disease, because of aches and pains in joints and limbs. She had had periods of unconsciousness over many years and her body was profoundly swollen, the hallmark of beriberi. Without going into details I was able to prove that this was indeed beriberi.

When I approached the rheumatologist who was her primary physician, I could not convince her of what appeared to her as too bizarre to contemplate. Notwithstanding, I had the cooperation with the nurses who followed my directions.  When the patient was given injections of thiamine, she recovered consciousness and the gross body edema disappeared.

So fixed in the mind of many physicians is the concept that a vitamin related emergency simply does not occur, it was called “spontaneous remission” by my colleagues and “had nothing to do with vitamin therapy”. When I asked the rheumatologist whether we could conference the patient, she ignored the request. Well, this was not the end of the story.

Resolving One Deficiency Often Unmasks Another

After she started the injections of thiamine, with recovery of the nervous system, she began to develop a progressive anemia. It was considered by the internists to be internal bleeding and a thorough search produced only negative results.  So ingrained is the negative attitude to vitamin therapy, I was even in fear that I might be blamed for causing the anemia. In the meantime, I took a specimen of urine and found a substance in the urine that suggested a deficiency of folic acid. Readers will remember that folic acid is a member of the B group of vitamins, as is thiamine. A blood test proved that she was indeed deficient in folic acid. When this vitamin was given to her, the anemia rapidly disappeared. This, believe it or  not, still did not interest my colleagues.

She was discharged from the hospital, receiving supplements of thiamine and folic acid and her nervous system gradually improved. Some months later she developed a rash of a type that had been reported a few months previously as due to vitamin B12 deficiency. She was given an injection of vitamin B12 and over the next few days suffered slight fever and variable joint pains. These were symptoms with which she was familiar and had been responsible for the diagnosis of rheumatic disease.  This sometimes happens temporarily with vitamin therapy, but often enough that I refer to it as “paradox”, meaning that things seem to be worse before they get better. Note that this paradox is not the same as side effects from a drug. The symptoms that cause a patient to see a doctor are temporarily exacerbated. With our present model the patient concludes that this is side effects from the vitamin(s) being used. I had to learn that paradox was the best sign that improvement would follow with persistence. She then continued on the thiamine, folic acid and vitamin B12.

The Role of Lifestyle and Diet Disease Expression – Oft Ignored Stressors

The fact that this woman was a chronic beer drinker and smoker had been ignored.  They were, if you will, the “stressors” that were the dominant cause, perhaps impacting on genetic risk factors. The relationship between alcohol and thiamine deficiency is well known and so she had induced her own disease. Since there was a profound ignorance concerning vitamin deficiency diseases, the beriberi had been referred to by her internists as “rheumatic” in nature. This is because joint and limb pain, usually not recognized for what the pains represent, are often associated with compromised oxidative metabolism, either in the limb itself or in the brain where the pain is interpreted.

Defective oxidative metabolism caused in this patient’s case by thiamine deficiency, causes exaggerated brain perception. The brain induced a pain that gave the false impression that the disease originated in the joints and other parts of the body. Even if the origin of the pain is truly from a joint or muscle, defective oxidative metabolism in the brain will exaggerate the sense of pain perceived by the patient. Although this “phantom” pain is known as “hyperalgesia”, the mechanism is not well known as being due to compromised oxidation in the pain perception brain centers. Thiamine deficiency was responsible for the hyperalgesia experienced by the case of a patient with eosinophilic esophagitis that was posted recently on this website.

Beyond Thiamine: Multi-Nutrient Deficiencies

What interested me in the woman with beriberi was that folic acid deficiency was not revealed until her metabolism had been accelerated by the pharmacological use of thiamine. The folic acid deficiency then became clinically expressed as her metabolism “woke up”. It had been well known for some time that folic acid produced anemia would have to be treated with both folic acid and vitamin B12.

In the case of folic acid deficient Pernicious Anemia, if vitamin B12 was not given at the same time, the patient would develop a disease known as subacute combined degeneration of the spinal cord. Because I had forgotten this fact, I had neglected to give her vitamin B12 until it was finally expressed clinically in the form of a rash. Associating a skin rash with a vitamin deficiency is certainly not commonly accepted as a possible indicator of an underlying cause by physicians.

Vitamin Deficiency Versus Dependency

Returning to the case of the 6-year old boy discussed above, we learned over time that his health was dependent on high doses of thiamine to function. Believe it or not, this child required 600 mg of thiamine a day in order to prevent his episodes of illness. If he began to notice the beginning of an infection he would double the dose. The recommended daily allowance for thiamine is between one and 1.5 mg a day. Here, and in many other cases, huge doses of the vitamin are required in order to accomplish the physiologic effect. This represents what I call vitamin dependency.

Thiamine and magnesium, like many other vitamins, are known as cofactors to enzymes. An enzyme without its cofactor works inefficiently if it works at all. The “magic” of evolution has “invented” this cooperative action which is in itself under genetic control. In technical terms, the vitamin has to “bond” with the enzyme. If this bonding mechanism is genetically compromised, the concentration of the corresponding cofactor has to be increased enormously by supplementation in order to prevent the inevitable symptoms. You can see that this requires a clinical perspective tied to unusual biochemical knowledge. This is in complete contrast to what is usually regarded as vitamin deficiency, arising from insufficient concentrations in the diet.

What is perhaps not known sufficiently is that prolonged vitamin deficiency appears to affect this bonding mechanism. For example, it has long been known that to cure chronic beriberi, megadoses of thiamine are required for months. I have concluded that the megadoses of thiamine given by supplementation to a patient with long term symptoms arising from unrecognized deficiency appears to re-activate the inefficient enzyme. It is as though the enzyme has to be repeatedly exposed to megadoses of its cofactor to stimulate it and restore its lost function.

This may mean that even if the bonding mechanism is normal in chronic deficiency, enzyme function has simply decayed from lack of stimulation. This may explain why genetically determined dependency and long term dietary deficiency will produce the same clinical effect. The dosing of vitamins, if the clinical effects of deficiency are recognized, is not well understood in traditional western medicine. When insufficient doses are given and the symptoms fail to abate, the practitioner views it as evidence that supplements do not work.

Biochemical Diagnoses are Complex

I want the general public to begin to understand the principles that underlie the complexity of biochemical diagnosis. Perhaps a reader might find that a case like this is a reminder of a loved one whose illness was never understood after seeing many different specialists, all of whom were like the blind men and the elephant. Each was confined to his specialist status but none of them could see the overall big picture.

Reading these cases, you might easily come to the conclusion that they represent a rarity. Chronically unrecognized thiamine deficiency is common. Dependency is  not uncommon. It is not as rare as is presently thought. Believe me, cases like these are surprisingly common and are responsible for a great deal of diagnostic confusion.

Vitamins are essential to consumption of oxygen in all life processes. To go against the principles of diet dictated by Mother Nature is a risk to life and limb that is not worth the derived pleasure. When limb pain is experienced without an obvious trauma, it is difficult to accept that it is because of inefficient use of oxidation in the brain, but that is exactly what we found.

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This article was first published on April 16, 2016. 

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52 Comments

  1. Dr. Lonsdale,
    I am a mother of 6 children. Most of my pregnancies were back to back. I had 8 total pregnancies and miscarried my 5th and 6th pregnancies. In 7th and 8th pregnancies I started experiencing tachycardia, dizziness, presyncope and blurry vision. Post pregnancy, my pulse shot up to 140 bpm at rest. I’ve since been diagnosed with dysautonomia. My issues range from the tachycardia (medicated on bisoprolol for it), gastroparesis, gut bacterial infections (SIBO treated with xifaxan and now c.diff- treated on flagyl for that), along with feeling air hungry, dizzy, (have to yawn to feel like I’m getting a good breath), and bladder retention. I have inappropriate anxiety and feel fight or flight panic at very odd times- even while resting. I feel like I’ve lost my quality of life and have trouble carrying out my daily duties because of how I feel. Any thoughts? I observed a recent post about thiamine deficiency and the link to dysautnomia. My symptoms have gotten worse with the medication (flagyl) including weakness in my upper body (I can move but I feel weak).

    1. I suggest that you obtain a book by Dr John B Irwin, “The Natural Way o a Trouble Free Pregnancy” Aslan Publishing,2490Black Rock Turnpike,#342.Fairfiel CT 06825 Ph 203 372 0300. You might also be interested in Lonsdale & Marrs ” Thiamine Deficiency Disease, Dysautonomia and High Calorie Malnutrition” available at Amazon books

    1. Hi Steve, I read the account of your daughter’s problem with some interest.She reminded me of the many children that I have seen with a clinical diagnosis of cerebral palsy.You may or may not know that this is commonly regarded as the result of brain injury during the birth process. You say nothing about this in your account and you do not mention nutrition during pregnancy.In my view she undoubtedly had some kind of an episode of hypoxia and this could be genetic, traumatic or nutritional in character.There are at least two clues: the first is the failure to suck, a vital reflex and the second is the protracted neonatal vomiting. The strabismus suggests that there was a neurological effect too.Hypoxia results in mitochondrial damage and if I were her physician I would not hesitate to give her some kind of mitochondrial cocktail. There is no pharmaceutical in the world that will make any real difference and the only thing that is plausible is an approach to energy metabolism. Autism is now considered to be mitochondrial in nature and both thiamine and vitamin D have been implicated. However, making a strictly clinical diagnosis is of little help. The brain is an electrochemical machine and you can only influence it by the skilled use of nutrients. I would suggest that you obtain our book on thiamine disease that is available on Amazon books. It will help you to understand that the biochemical effect can produce a diversity of symptoms that make the idea of clinical diagnosis useless.

      1. Thank you for your response! I appreciate you taking the time to look at her case. Under the “Current Diagnostics Completed” section I mention that her MRI results showed no indication for cerebral palsy diagnosis (much to our amazement as we seriously thought ataxic cerebral palsy was what she had!).
        Did you have the opportunity to view any of the footage I took of her listed at the bottom of the post? It may clarify more of how she presents her symptoms. Really interested in the thiamine disease suggestion, will definitely look into getting the book. I will ask our paediatrician regarding the mitochondrial cocktail, thanks for your help.

  2. Hi! First – I wonder if this product may be useful? http://www.metabolics.com/vitamin-b1-thiamine-pyrophosphate-60caps.html (I found it here in Sweden, but I will order Allithiamine from Uk otherwise)

    I am 29 years old woman in Sweden and I have been sick since childhood. Diagnosed with me/cfs, Ehlers danlos syndrome, enteric dysmotility etc. But my main symptoms are:

    *Breathing problems (my breathing doesn’t work, but I have normal lung function, but low PEF. Feels like my body forget to breath, the muscles doesn’t work. I have problems with everything, eat, rest, walk, talk… Started 8 years ago… My life has been a hell since then)
    * All my muscles are extremely tight (including diaphragm, abdominal muscles etc) and when I stretch they get even tighter. Like a whole body spasm. Looks like I have tetanus sometimes.
    * Numbness and tingling in legs, arms, trunk, back, neck, bladder, face, tongue etc. Nerve pain in many places.
    * Severe face pain and spasms
    * Gut motility problems since I was 12, indigestion, subileus, malabsorption etc.
    * Dysautonomia (but not POTS)
    * Pain in body and inflammation
    * Flu symptoms
    * Muscle loss, weakness, the muscles just doesn’t work..can’t lift my arms sometimes etc.
    * Cogwheel rigidity, mild tremor
    * Skin doesn’t heal and lesions on the palms of my hands

    And much more.

    The symptoms has not got better from b12, methylation protocols, diet changes. I just get worse and worse… So I will try TPP now.

    1. I will try to answer this post in some detail.
      1. TPP stands for thiamine pyrophosphate. When you take thiamine in the diet it has to be converted into TPP inside body and brain cells. Therefore, the first thing is to get dietary thiamine into the cell. This requires a protein that binds the vitamin and enables it to pass into the cell. There are a number of proteins that do this and are known as thiamine transporters. The transporters are also under genetic control and their absence is a common cause of thiamine deficiency. The beauty of Allithiamine is that it does not require a transporter and enables the vitamin to get into the cells.
      2. Breathing problems with normal lungs. Breathing has to be automatic because it has to function even when we are asleep. The controlling mechanisms are centered in the brainstem, a part of the brain which is peculiarly sensitive to thiamine deficiency. The connections between the brainstem and the muscles that are used for breathing are part of the autonomic (automatic) nervous system. She states “it is as though I forget to breathe”, meaning that automatic breathing is compromised.
      3. Dysautonomia. She talks about “gut motility problems”. A nerve goes from the brain to all parts of the gastrointestinal tract and is part of the autonomic nervous system. It is a failure of this nerve that is likely to be the cause of this problem.
      4. Although sick since childhood, many more symptoms developed at the age of 21. This suggests that a relatively minor genetic risk factor was impacted at this time. This could be dietary or “stress” related, adding an additional burden to an already existing energy deficit.
      5. She is asking the question whether the use of megadose thiamine would be likely to help her. The first thing would be to find out whether this is the underlying cause, a question for the physician. Since all the symptoms will be found in an average case of long-term beriberi, this is a logical question to be answered.
      6. Refeeding syndrome. Should thiamine deficiency be proved it is important to understand that a paradoxical period of increased symptoms would be generated by administration of thiamine. Therefore a low dose should be started and increased as the paradoxical period gradually disappears.

      1. Thank you SO much for this! I have ordered Lipothiamine (quicker delivery than Allithiamine to Sweden). I have tried some benfothiamine for some days and I immediately got worse edema, extreme fatigue etc. I guess I get effect in some parts of the body, but I need TPP for brain/nerve system?

        They do not test for thiamine here. They have ruled out other conditions with MRI:s of brain/spine, EMG, blood work etc. My doctor is kind, but he does not know how to help me, even if he tries. Some symptoms got better from b12 injections (I also take methylfolate and b-complex), like brain fatigue. But many things got much worse, like muscle problems, skin, dysautonomia (I get very low blood pressure like 60/40 when upright and lower heart rate upright), trigeminal neuralgia, all sensory symptoms etc. I wonder if it maybe depleted my thiamine even more. One symptom I did not mention is that when I eat I get totally depleted of energy. I get tics, extreme weakness, muscle spasms, fatigue. I guess it´s maybe related to ATP and thiamine is needed to get energy from food. I have much more energy when I don’t eat..

        I’ll try Lipothiamine (in combination with other b-vitamins, magnesium, minerals etc I already take) as soon as I receive it. Thank you very much for your helpful reply! All the best!

        1. You will get worse temporarily with ANY thiamine derivative, including Lipothiamine. PLEASE READ the post about PARADOX——–point #6 above. Refeeding syndrome and paradox are the same thing by different names. You must tolerate worsening for an unpredictable time as long as a month. You MUST be un der the care of your physician during this period. It is the only time that this kind of treatment is potentially dangerous and your physician may not know this. He should do a little research on his own

          1. Yes, I am under the care of my doctor and I’ll give him more information to learn from too. I have read a lot of your information here and it’s very useful. I am aware of the paradox/refeeding syndrome and I’ll be careful and start with low dose. Thanks!

  3. Hi,

    I want to know about the normal serum thiamine level in adults done via LC/MS technology.
    My serum thiamine is 0.64 ng/ml. Please tell me whether it is normal and what is the normal serum thiamine level in ng/ml unit?

    Thanks

    1. The normal is 75-185 nmol/L. Yours is ng/ml so ask the lab whether it is normal or not. Bear in mind that knowing the concentration in blood tells you nothing. It can be normal if you are deficient. It is only low with prolonged nd severe deficiency or for genetic reasons.

  4. thiamine + taurine

    https://www.ncbi.nlm.nih.gov/pubmed/8619301

    [On vitamin B1 metabolism in avitaminosis and its correction with thiamine and taurine].
    [Article in Russian]
    Chernikevich IP, Gritsenko EA, Lisitskaia IM, Luchko TA.
    Abstract
    The levels of phosphate esters and the activities of thiamine biotransformation enzymes in the blood and tissues of albino rats were studied during oxythiamine-induced B1 deficiency and after metabolic correction with thiamine and taurine. Among thiamine phosphates, the most informative indicators of thiamine deficiency were shown to be triphosphate esters and free thiamine diphosphate. The biosynthetic enzymes thiamine kinase and thiamine diphosphate kinase played a decisive role in maintaining the initial rate and in recovering the physiologically active forms of vitamin B1. The activation of hydrolytic enzymes of thiamine phosphate esters occurred by producing abundant free thiamine diphosphate and thiamine triphosphate. Within the first hours, taurine favoured the acceleration of phosphoester biosynthesis and, accumulating in the tissues, inhibited vitamin phosphorylation reactions.

    PMID: 8619301

    1. I understand the importance of taurine but what is the mechanism? Magnesium taurate seems to be the best supplement so how does the picture come together?

      1. i was hoping you could tell me the reason taurine was used in this study?

        Why isnt there a lab that will offer the transketolase testing in the US? almost like a conspiracy ?!

      2. i also read that taurine is used to push magnesium and potassium into the cells…maybe this make it more bioavailable for the thiamine ?

        1. An article in Russian whose abstract is available on PubMed is by Chemikevich IP, et al. [On vitamin B1 metabolism in avitaminosis and its correction with thiamine and taurine]. You can read the abstract by going to PubMed

  5. Hi Dr Lonsdale,
    I’m 31 years old and in November 2016, I took Cipro for a suspected kidney infection and developed many symptoms that have been ongoing. I have severe vulvar burning and urethral pain, burning urination, burning stools, allodynia, peripheral neuropathy, changes in hearing (everything became terribly loud), ear fullness, low thyroid, etc. All of my symptoms wax and wane and bounce around. In April I started doing the low oxalate diet looking for relief, I also started using a b12 patch that includes all of the other b vitamins, and a supplement called Histaminx that includes quercetin and rutin (which I have recently read are b1 antagonists). I was already taking glutathione and magnesium malate since December after being floxed. In May I started having lots of hair loss and random widespread burning sensations. In June, despite the continuing hairloss, I had two weeks of feeling really good and thought I was maybe back to normal! Now, this month, I was visiting my mom, spending a lot of time outside in the Texas heat. My left foot started feeling numb and also would feel a little swollen, like my shoes would feel tighter. I thought I may be getting toxic on b6 so I stopped using my b complex patch. After I can back home from visiting, I’ve had burning sensations in my legs and feet and have had moments of feeling really out of it and strange. My arms feel heavy and it almost feels like I’m losing some function in my left hand. My hand works but it feels strange if that makes any sense. I told my Dr about my symptoms and he ordered some blood work including a CBC. My white and red blood counts are low, including absolute neutrophils and monocytes. Before taking the Cipro, I was currently nursing my second child who was 13 months old at the time. I had two children close together and nursed for several years. I’m thinking my body was already deprived of nutrients from being pregnant and nursing, being under a lot of stress, I had just started drinking coffee to help me stay awake after being up all night with my baby, etc. Then I took Cipro and my health completely fell apart within a week after previously being young and healthy. Do my symptoms sound like they can be treated with thiamin? Should I continue with magnesium malate and how big of a dose to complement thiamin? I bought benfothiamin today but have not started it. I’m very sensitive to supplements and am very petite, only 5’0 95lbs. What is a good dose to start? I’ve been suffering so much for the past 8 months and just want to feel better. Have you ever treated anyone with urogenital pain?

    1. There is little doubt that this polysymptomatic condition is mitochondrial in nature. I would suggest that you start the Benfotiamine in the smallest dose available because you will almost certainly have a worsening of symptoms (see the post on this website under the heading of paradox) initially. As the symptoms begin to settle down on this low dose you can start increasing it. I recommend that you do this under your physician who can read about it online under my name

      1. I am just seeing your response and already started the benfothiamine. The capsules are 200mg, so I took I divided it and took 100mg with breakfast and with dinner yesterday and with lunch today. Along with 250mg of magnesium malate each time. I’ve been having chest pains and am wondering how to move forward. I ordered lipothiamine and it comes in 50mg servings. Should I take that instead? Also how much magnesium should I take with it?

  6. I have a 19 year old son with Down syndrome and this population has manganese deficiency. In addition to thiamine deficiency, we have the CBS enzyme on the 21st chromosome and there are folic acid and B12 deficiencies. Nobody knows the reason for the pooling of the folic acid and B12 in the blood, but I have a few thoughts. Transkelotase is necessary for the Pentose Phosphate Pathway and helps to increase NADPH which is needed for the DHFR enzyme to work properly. CBS upregulation is also connected to folic acid and B12 issues. I was wondering if you would shed some light on what the biochemist told you years ago (per the article below) – exactly how does thiamine help with the utilization of folate or is that more than one way? Looking for clues ….

    https://epidemicanswers.org/the-folic-acid-paradox-and-the-importance-of-vitamin-balancing/ “Dr. Derrick Lonsdale, a pediatrician in Westlake, Ohio, and the world’s leading expert on vitamin B-1, may have stumbled on an explanation. He discovered high folic acid levels in the blood of a child with a rare lymphatic condition. Confused, he consulted a biochemist hoping to find a plausible reason.

    The chemist explained that vitamin B-1 is a co-factor in utilizing folate. Perhaps, if B-1 were deficient, the underutilized folic acid would back up in the blood. Dr. Lonsdale confirmed the theory by prescribing a large dose of B-1, along with a B-complex. Not only were the youngster’s folic acid levels normal upon retesting, but also his lymphatic condition significantly improved”

    1. Thiamin runs the cellular “engines” by synthesizing ATP. Folate is part of the transmethylation cycle and is the equivalent of the transmission. Compromise ATP and the transmission falters. Folate piles up because it isn’t used. Thiamin administration increased ATP and —–voila!!!

      1. Dr. Lonsdale,
        I recently sent you a post on May 2, 2017 on your gardasil red fiber article and had not heard back from you yet, so I thought I would give it another try.
        Sorry in advance that this is so lengthy, but I am hoping you might have some suggestions or knowledge as to whether this sounds like thiamine deficiency. I am also wondering your opinion on how to confirm my suspicions? If I should do another MAP test or an OAT (organic acids test)?
        I had my first child in Dec. 1997, I fell and hurt my back in Feb. 1998 and was diagnosed with salmonella poisoning in June that same year, after a lot of diagnostic testing. Then came the antibiotics, and for about a year my GI tract was so messed up and inflamed, I was unable to eat much, I lost 25 lbs in about two months. I am 5’8″ and I got down to 125 lbs. I thought I was dying. All my tests were coming back normal, and the gastroenterologist told me I had IBS because they couldn’t find anything else wrong. The doctors ended up putting me on elavil, and I began sleeping better and got back somewhat of an appetite.
        By October 1998, I got pregnant with my second child, and that pregnancy just might have saved my life because my appetite came back even better and things seemed better, although I still suffered with anxiety.
        Fast forward to 2013, after suffering for years with female yeast problems, I began researching and found a natural solution ( vit c supp.) however, I wanted to cure my anxiety, so I began researching methylation.
        After testing my genes, my goal was to improve my anxiety and get my methylation working. I had decided to go back to school to learn more about the subject and had entertained the thought of becoming a dietitian. I already had my bs in business, so it wasn’t going to take me as long.
        Also at this time I had contacted an ND out in Utah, and he had me on a special diet for two weeks to heal the gut. Then I began another new diet and Dr. Ben Lynch’s seeking health multivitamin that had methylb12 and methyl folate among many other vitamins. I actually was feeling pretty great for the first 26 days, aside from some calf cramping, which he was having me make an electrolyte cocktail for. But on that 26 th day, I began having terrible anxiety, my skin felt like sound was vibrating off of it, and I broke into some hysterical laughing, that ended in tears. I contacted another doctor, and he said I needed lithium. Lithium has something to do with the transporting of b12, although they don’t know all the mechanisms of how this works.
        So it was then March 2013 that I decided to switch to a doctor in CA by Skype. I had some testing done, an extensive history, and the doctor made a plan. All was going pretty well, until I started having some female yeast problems again. The doc suspected it might be diet and referred me to a health coach who helped with diets. This person was a coach that gave several diet suggestions, but it was more confusing than guided, so I just picked one. It was also around this time that I stopped my studies at the college because I was becoming stressed. So I started the body ecology diet to get rid of the yeast. What I didn’t understand at the time, was that this diet has some high glutamate foods that can cause excitation! And I was eating a lot of these fermented foods. Which I learned was not good for my anxiety. I was on the diet for a while when my doctor had me start adding in methyl folate drops to my regimen, and within three weeks, I crashed. I began experiencing dizziness, and I had a hair metals test come back with my copper high, my magnesium was high, and my sodium and potassium had both dropped low. Every time I would take my supplements my ears felt like a vacuum in my head. I started having insomnia, extreme anxiety, dizziness, hair loss, headache in my left temple, pain in my left ear. It seemed like I had a flare of yeast at that time in my nasal cavity. I had been to the dentist around that time and experienced tightness in my hands where I couldn’t hardly open anything (like I had arthritis) luckily the hands not working was temporary. At this time my local doctor put me on Remiron ( not sure of spelling) because Xanax would not even touch my anxiety, and seemed to make it worse. I could finally sleep, but it would knock me out until almost 10:30-11 am the next morning. I still use it as a crutch sometimes when insomnia gets really bad. I stopped all vitamin supplements and saw a neurologist.
        My office exam evaluation came back normal. When I asked my doctor in CA why this happened, I was told it was probably because of too many methyl donors. I didn’t understand enough about snps at the time, but since then have learned that my hetero COMT, and VDR Taq (normal) snps can limit my methyl budget. I’m still not sure what this all means, and after asking several times, have never really gotten a clear cut answer. I was also told that I should not use methyl b12, but rather hydroxo or adenosyl forms. However when my serum b12 levels have been tested while taking these forms my level was 1142, and my b6 serum level was tested recently at 88 w/ ref. range of 10-20. Have Homo MTHFR in the b12 conversion problem, along with a couple MTRRs. After this episode, the doctor scaled back on my vitamins, but I just seemed to be going down hill after that.
        By jan 2016, the doc asked me to run a methylation profile plasma test to look at SAMe and SAH, methionine, etc. it came back with my SAMe very low. 87 w/ a reference range of 86-145. My SAH was 8.0 w/ ref. range 10-22. My homocysteine was good at 6.6. So I was advised to add SAMe to my daily vitamins. This addition helped a little with sleep as well as Passion flower and 5 htp, but I began having problems with my hormones, and fibrotic cysts. Early on in the protocol, (before the methylation crash in May 2015), these things had all improved, and now I was feeling this slow steady decline the other direction. I think the crash actually almost wiped out my adrenals.
        In June and December of 2016 I had a health issue scare that had my anxiety kicked up again and by January 2017 my doctor in CA told me that she was putting me on hold until I could get my anxiety under control.
        So in March 2017, I started looking into the oxalate diet, because I know it runs along with yeast a lot of times, and started trying it. Not long after trying it, I had an episode with my right arm muscle pain that I referenced in my other post on the gardasil article of this hormones matter site. I also went to a doctor who specializes in bio identical hormones. He started me on a regimen with several methyl donors, and again my anxiety has kicked up, and yesterday, I awoke with severe dizziness to the point I was spinning. I got sick several times and at times could not walk because of the dizziness. I’m also still was having insomnia, hypoglycemia, among other things. This doctor has also put me and my husband on three months of yeast meds for chronic yeast, as well as a diet with no sugar or grains. (Further lowering thismine?). Progesterone was low, and estrogen high, SHBG was also high, taking things for these problems. Cortisol is low and reverse t3 is elevated as well as tsh. Thyroid antibody was high. I thought I was going to die yesterday after getting up to go to the bathroom. I nearly collapsed. I had just been to the doctor the day before for anti anxiety meds, because I think all the methyl vitamins (SAMe, tmg, DMG, coq10, methyl b12, and might have a couple more, I think have made my anxiety bad again.) the doctor gave me an antihistamine and is treating my vertigo for a virus in the labyrinth. Although she said there is no physical pain symptoms in these situations. I called the doctor who prescribed the yeast meds and he said I could add in gluten free oats and brown rice since I was having the hypoglycemic episodes.

        I asked to have my b1 checked, by my doctor the day before the dizziness started and he said unless I was an alcoholic, it was very unlikely that I had a b1 deficiency. I asked him about a genetic problem, and he said he didn’t know. I printed the article on thiamine deficiency and left it with him to read. The reason for me thinking I have a thiamine deficiency is that I had a metabolic analysis profile (MAP) test in December 2013 that showed I was in high need of thiamin b1 with a suggested dose of 50 mg and i was borderline for riboflavin b2. I also showed high butyric acid of 6.6. w/ ref. range <=2.8. My adipic acid was 2.4 w/ reference range of <=2.8., my ketoisovaleric acid was 0.86 w/ ref. <=0.97, ketoisocaproic acid was 1.17 w/ ref. <=0.89, and keto-methylvaleric acid was 2.6 w/ ref. =0.44. And a-hydroxlisobutyric Acid was 8.3 w/ ref. of <=6.7. Not sure of what all this may mean, but my doctor at the time just put me on a multi vitamin. So I don't think it probably fixed the problem, but when I showed the doc this test this week, he is a DO, but practices more conventional medicine and basically said the test was too old to be considered accurate. So I might have to do this more expensive test to get an answer, since he wouldn't even try doing the serum test.
        There is one other doctor in my area who I have set an appt with that might be able to do the Erythrocyte transketolase test.
        Not sure what you may make of this mess, and it is really hard to find a doctor who knows or understands the methylation issues at this time. If you can provide any insight I would greatly appreciate it! What kind of a doctor should someone look for? A doctor who understands metabolic data, or genetics?
        Thank you again for be so gracious and taking the time. I wish there were more doctors like you. You seem to have so much knowledge, and I think it is wonderful that you are continuing to educate patients. May you continue to be blessed Dr. Lonsdale.
        With much grace,
        Tami

        1. I am afraid that you are caught between the principles of Orthodox medicine and Integrative medicine for there is little discussion between the two. This seems to be very little doubt that you have mitochondrial deficiency disease and there is a high prospect that it is thiamin deficiency, because that seems to be the leading cause.
          I would suggest obtaining Lipothiamin (I have written a great deal on this forum about this) and taking it with magnesium in addition to your multivitamin. If your physician is “on the ball” he could do a lot worse than injecting you with B complex repeatedly

          1. Dr. Lonsdale,
            Thank you for your reply, I am hoping to do an OAT test soon, and have inquired to a local doctor about the Erythrocyte transketolase test. I ordered the lipothiamine you suggested on here from CA, but when I received it, I noticed it contains Alpha lipoic acid, which can move metals around, and I still have three fillings I need to replace. So I found the TPP on Seeking Health website which is (thiamine pro phosphate chloride) which is a lozenge of 10 mg. (co enzyme form of active thiamine). Would this be ok to take? It is the only ingredient. Also do you recommend slowly increasing to 100mg, and should I expect any detox with adding it?
            Your advice on this would be greatly appreciated.
            Thanks and God bless,
            Tami

            1. Dr. Lonsdale,
              I actually called Ecological Formulas(CA) today, and the woman I spoke with said that the allithiamine is the same as the lipothiamine minus the alpha lipoic acid. So I ordered a bottle of the allithiamine. Still wondering if I need to slowly work up so I don’t get a lot of detox. Just wondering what kinds of improvement I might notice? Also, it would be great to understand maybe in a future article, just how b1 is related to b6 and b12 in methylation. My b12 and b6 are both higher and evidently must not be getting in the cell, could you explain why this may happen? Or is there more than one cause for this?
              I also would like to know more about the connection with thiamine and glutathione. The doctor I am seeing was having me use glutathione cream on my feet, and I am wondering if this could further deplete b1?
              Thank you for sharing your knowledge, you are such a blessing!
              Grace and peace to you,
              Tami

              1. Dr. Lonsdale,
                Is there a correlation between histamine and low b1? Just curious. It seems a lot of the same people are in groups with oxalate, histamine, yeast, thyroid, and adrenal problems in health forums. Just wondered if b1 deficiency could be the beginning of the problem?
                Thank you, and I am enjoying your book on, “Why I Left Orthodox Medicine.” Wish there were more doctors like you.
                Grace and peace,
                Tami

                1. There may be. I think that histamine is released into the skin by a message from the brain. Thiamin deficiency makes the brain more irritable so it is a possible connection.

  7. Dear Dr. Lonsdale,

    I’m a 46 yo female with chronic (best term??) low thiamine. I was asked to share my story/symptoms/treatment here. Seems lengthy, but here it is:

    I’ve always considered myself fairly healthy, with some annoying health problems, but nothing I considered major. I’ve had issues with insomnia, depression, nerve problems, migraines, hypoglycemia and GI distress (mostly diarrhea) for years or decades. I’ve also had some discomfort on the left side of my chest, on and off, which goes unexplained. I’ve seen many different types of doctors, including cardiologist, neurologists, gastroenterologists, psychiatrists, sleep specialists, endocrinologists, allergists, etc. I have very early visual symptoms of glaucoma, but my doctor said there aren’t any signs of it in my eye. I should mention that I’m a registered dietitian nutritionist, as of 8/2016, and never imagined I’d be spending so much time trying to treat my own deficiency!

    In 12/2014, I was finishing my first semester in the dietetics programming. I was having severe insomnia, nerve problems and eventually severe anxiety. I also noticed some garbled speech & numbness around my mouth/tongue, but thought I was imagining it. I had chest discomfort, left side, too. School was going well & I didn’t feel the anxiety was related to it, especially since it was worse after the semester had ended. My PCP gave me meds to help me sleep & eventually suggested a daily anti-anxiety med. Wasn’t working well as I was sleeping maybe 3-5 hours, if that. I had trouble eating a full meal & was losing weight. I contacted my adviser to drop out of school. Fortunately, she wanted to keep me in the program and wanted to work with me through the next semester. At no time, did my PCP do any lab work. By 02/2015, I was down to 103 lbs (I’m 5′ 4″ & normally 125lbs). In 03/2015, I was put on 7.5 mg Remeron & weaned off other meds, except Ambien PRN. I finally began gaining weight & strength.

    in 11/2015, I went to see an RDN who was an integrative & functional medicine certified practitioner. She recommended a some blood work, which my PCP reluctantly agreed to do. There were many positive or problematic results, but among them: B1 whole blood 29ug/L, +ANA, TPO 693, Mg & Ferritin low normal. After more tests, it was determined that I Hashimoto’s disease too.

    As a RDN, I have what I thought was a very healthy diet. I consume little added sugar, adequate fiber, protein and water. I’m very careful with my fat intake because I had a cholecystectomy in 2009 & still have problems with lipid digestion. I rarely drank alcohol, and drank a 1-3 cups of tea/day and water. Because of my Hx of hypoglycemia, I eat mostly whole grains and very little wheat.

    In 01/2015, I began taking a B-complex, Magnesium, lipothiamine, in addition to some other supplements. I made some changes to my diet, including gluten-free. I began feeling better. I managed to graduate that spring, something I doubted would happen at one point. That spring, I was taken off the lipothiamine, but continued the B-complex & magnesium and others. I seemed to be doing well.

    In 10/2016, I had an infection (perhaps insect bite) on my outer ear which wouldn’t go away, so I was given a cephalosporin ATB for 10 days. Towards the end of November, I was having some increased nerve pain, insomnia (mild), apathy & anxiety. Also, had the same chest discomfort again. My thiamine was tested and it was low again, 32 ug/L. I was taking the B-complex & magnesium, so my PCP was confused & unsure what to do. I saw the RDN again & started lipothiamine again on 12/23/2016. My PCP planned to retest in 1 month, however, on 01/20/2017 I had an emergency appendectomy. During the surgery, I was given a cephalosporin ATB, but it was only during the surgery, not afterwards. By the end of the first week, I strongly suspected my thiamine level had bottomed out, because my symptoms of anxiety, insomnia, nerve pain etc reminded me of what happened 2 years before. During that week, I was taking 50 mg lipothiamine 2 times/per day, 200 mg magnesium and a potent multivitamin. Personally, I think the ATB, surgical procedure/recovery and resulting diarrhea contributed to the low thiamine despite supplementation. I almost went to the ER in hopes that they’d give me thiamine injections or IV, but waited to see my PCP the next Monday. Of course, she didn’t know what to do & suggested I continue the supplements & retest in a month. My thiamine level was low again after 1 month at 32 ug/L. My PCP is uncomfortable with thiamine injections and her only suggestion is that I see a GI doctor – again. My PCP doesn’t seem interested in reading anything on this website. I’m not hopeful about the GI appointment, at this point. I saw a neurologist recently, who suggested a DO practice about 1.5 hours away who “might” be able to help me.

    I’m sleeping now. My hypoglycemia seems to be under control. Not sure if that’s because of the B1 supplementation or the gluten-free diet. Last time I had gluten, I experienced both insomnia & hypoglycemia. I feel I have some memory issues. Also, the numbness and tingling in my extremities continues, but not as severe. Migraines occur much less & are less severe. I still have some apathy & mild anxiety occasionally. Mild vision problems linger.

    The RDN I’m seeing is uncomfortable with me taking more than 100 mg lipothiamine/day. At this time, she is also trying to treat continued GI inflammation.

    Here is my current regimen: 100 mg lipothiamine/day, 200 mg magnesium/day, multivitamin 1/day (RDN wants me to take 2/day), 28 mg iron w/vit C, sodium butyrate 600mg 4/day, NAC 600mg 2/day, Ortho-Digestzyme 2 capsules before each meal to help with lipid absorption, and about 4000 IU vit D3.

    Unfortunately, I feel I’m just a 1 missed dose of my supplements away from problems all the time now. I’m not sure how to find a physician who can help me solve this problem and don’t know where to turn next. I’m going to see a GI doctor & cardiologist this month, but I feel it will be more of the same.
    My father died at 45 yo of cardiovascular disease. I know thiamine deficiency can lead to cardiovascular problems too, which is why I’m going back to the cardiologist.

    Any suggestions are welcomed!

    1. Site unseen, this story seems typical of mitochondrial disease and it probably has a genetic background. I would strongly suspect a defect in one of the thiamin transporters. Mitochondria become dysfunctional with thiamin deficiency. Your dose of lipothiamine can be increased with impunity for it is entirely non-toxic. The low blood thiamin is the clue. The dose of magnesium is also rather low. I suggest that you consult a physician who practices Complementary Alternative Medicine

      1. Thank you Dr. Lonsdale.

        Is there a test for such a genetic defect? I know genetic tests are expensive, but I’m willing to consider anything that might prevent my 11 year old daughter from experiencing the same things.

        CAM physicians are hard to find around here (southeast Michigan). That’s how I ended up seeing an integrated and functional medicine certified RDN. Have you trained anyone with regard to thiamine deficiency?

        1. I reread your story with some interest. The death of your father is almost certainly the same genetic cause that you have and the major clue is the low thiamin content of your blood. The beauty of lipothiamin is that it does not need a transporter. Because you have had a lifetime of thiamin deficiency from cellular malabsorption, the enzymes that require it have almost certainly deteriorated in quality. That means that you have to use thiamin as a drug in an attempt to resuscitate the functional ability of the corresponding enzymes. Since lipothiamin is non-toxic you can push the dose much higher than you are taking. Intravenous or intramuscular thiamin would also help. The trouble with all this is that the principle of genetically determined and dietary deficiency of thiamin is not yet accepted by the medical profession. Look for a book to be published by Elsevier some time this year and entitled “Thiamin deficiency, dysautonomia and high calorie malnutrition” by Lonsdale D and Marrs, C

          1. Thank you for this latest reply. I saw a gastroenterologist today (my PCP suggestion), and as expected she didn’t have any further suggestions. However, she did agree with your suggestion to try injectable thiamine and she gave me a prescription for 100MG/ML. It’s not covered by insurance, but I’m willing to try it. The GI doctor wasn’t sure about dosing though. I’ve been searching online to come up with an appropriate dosage, but haven’t found anything specific.
            Do you have any recommendations for dosage of injectable thiamine?

            I’m still searching for a local physician to work with me more on this issue. There is a physician who specializes in metabolic medicine, but she doesn’t take insurance and the first visit is $600.

            1. L. Perry: Many of your symptoms remind me of my own problems. High-dose thiamine (3/day of BenfoMax) was life-changing for me, and I will forever be in debt to Dr. Lonsdale for his research. In addition to high-dose B1, I also need high doses of B6 (taken away from the B1) and zinc (50 mg, picolinate form). B1 can inactivate pyridoxal kinase, effectively de-activating your B6. Many of us with clinical deficiencies do not do well on “B multis” for this reason.

              In my experience, low thiamine often travels with high iron. I found high iron at least partly to blame for such symptoms as insomnia, neuropathy, memory issues, and vision problems. I also notice you react to wheat, which is always “fortified” with iron in the U.S., and some speculate that the widespread gluten reactions might actually be a response to the iron. Dysregulated iron metabolism is widespread, and under-recognized.

              Also, you are taking iron (28 mg! and with vitamin C!). I would strongly suggest getting your hands on a book called DUMPING IRON: How to Ditch This Secret Killer and Reclaim Your Health by P D Mangan. In conjunction with Dr. Lonsdale’s research, it was the final puzzle piece for me.

              Good luck,
              Alethea

              PS With regard to protecting your daughter, you might look for HFE (“high Fe” genes on genetic testing. Even one copy of an HFE gene (e.g., in my case, H63D) can mean you have problems regulating iron. These problems will not necessarily be reflected in conventional lab results. I repeat: Do not expect anything, even in a full iron panel, to appear abnormal. Nothing (not ferritin, not %saturation, not TIBC) was ever abnormal with me. You may have to learn to rely less on test results and conventional medicine. The current system does not really recognize ferrotoxic illness, thiamine dependency, and mitochondrial disease. Perhaps in the future they will.

  8. Dr. Lonsdale-
    I am so thankful for your work. In March of this year I became quite sick with a “bug” that was going around my house. Within seconds I began to have severe heart palpitations and muscle weakness. This began a LONG journey of tests for the multitude of symptoms that followed including decreased exercise endurance, Fatigue, Lightheaded upon standing, Yawning, sighing, air hunger, Ringing in ears, Tingling in hands and feet, Insomnia and frequent awakening, Vertigo dizziness, Digestion issues, Increased startle response, Blurry vision, Digestive issues, brain Zaps, and Bulging blue veins–none of which I had had EVER prior to march of this year. My primary doc found I was deficient in Thiamine thru and regular serum level (38 with range of 57-100 something). She told me to take 100mg of thiamine supplements, but I also added 300mg benfotiamine to my regimen. I haven’t noticed any HUGE results after a month and wondering if I should get a Eyrthrocyte Transketolase test–I was hoping you could direct me to a lab that does this. My doctor and I have had a hard time finding a place that will do this! Thank you for taking the time to read this! And thank you for your work. (Ps I did receive all 3 Gardasil shots in my late teens-will always wonder if that’s the reason for all this).

    1. This is a clear statement of mitochondrial dysfunction. The “bug” was not the cause: it was the stressor that initiated the many symptoms of autonomic nervous system dysfunction. You may well be right about the association with the vaccine. You may have a mutation in one of the thiamine transporters that makes it very difficult for you to absorb thiamine. Benfotiamine does not cross the blood brain barrier and it is the brain that needs the thiamine. You should get Lipothiamine, available from Ecological Formulas online. It does not require transporters. Magnesium is as important as thiamine so you should obtain magnesium potassium aspartate or equivalent magnesium salt, also available from the same source. Add in a well-rounded multivitamin and you may get relief. Do this with the care of your own physician.

      1. Thank you very much Dr. Lonsdale. Will do, under the care of my primary doc of course. Do you have a lead on where my doctor could order a Eyrthrocyte Transketolase test? Again, much thanks for the direction!

      2. Derrick, please check your pharmacy records to see if you had taken any floroquinolones: such as Levaquin, Cipro,Avalox, etc. The symptoms that you are describing here are those associated with adverse reactions from ingesting Floroquinolones.

  9. Dear Dr. Lonsdale!

    I’ve been eating a paleo diet the last 2 years and also experienced a lot of stress and was mentally as well as physically very active. I was probably undereating and found out the there weren’t hardly any sources of b1 in my diet. I’ve been experiencing a lot of symptoms which could be related to thiamine deficiency (although some of these symptoms I already had before this time). I was already checked by a neurologist, they also did an MRI, checked B1 in whole blood and didn’t find anything.
    They said to me that I don’t have to worry about it being Wernicke’s Encephalopathy, so I really hope that’s true (therefore I didn’t get Thiamin i.v.)!
    Nevertheless I am really concerned and not really sure what I should do about it, do you have any suggestions? I don’t think that I can get thiamine i.v. in my place and because I live in Europe I also can’t find allithiamine.
    Do you think it would be okay to take high dose benfotiamine or Thiamin HCL to reverse my symptoms? Because I think with high dose oral Thiamine HCL one could also achieve pretty high plasma levels (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3293077/), (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3293077/figure/F2/)?
    Would this be sufficient to penetrate the blood brain barrier enough if at all?
    My symptoms are pain in the calves, slight gait unsteadiness and problems with balance with closed eyes, brain fog, slow thinking, slight drowsiness, poor emotion control, poor concentration, fatigue etc…
    Do you think if it’s due to b1 deficiency that my symptoms are reversible?
    Would really appreciate a response and thank you a lot in advance!

    with best regards

    Sem

    1. Dear Sem, unfortunately, measuring the concentration of thiamine in the blood does not answer the question. It can be perfectly normal in the presence of thiamine deficiency. The MRI may or may not reveal changes. I would suggest to you that megadose thiamine hydrochloride is a good way to go because you cannot do your self harm. I had a child on as much as 7 g of thiamine so you can try 3 to 400 mg. But don’t forget to take magnesium at the same time because they work together and your symptoms may be more magnesium than thiamine. The only thing that happens if you take too much is temporary diarrhea and I think you should aim at about 300 mg.

      1. Dear Dr. Lonsdale, thank you a lot for your answer!

        So “The only thing that happens if you take too much is temporary diarrhea and I think you should aim at about 300 mg.” was related to magnesium and I guess magnesium citrate would be appropriate right?
        I read that if one took large amounts of one b vitamin it could deplete the others, so do you think that could be an issue and in general would it be a good place to start with one 500mg tablet of Thiamine HCL a day?
        Should I maybe get transketolase activity checked before I start with the supplement regimen in order to maybe get i.v. after all?
        Or would the oral administration be as effective?
        Sorry for those many questions but I really want to avoid possible permanent brain damage (if not already happend) 😉

        Thank you a lot again for your answers!

        best regards

        Sem

        1. In my last comment I forgot to suggest to you obtaining Lipothiamine, available from Ecological Formulas (California) online. it is easily the best absorbed thiamine. Your symptoms are typical of beriberi and unfortunately your doctors will think it absurd because the thiamine concentration in the blood was normal.

  10. I have several comments. This is a beautiful example of everything being connected to everything else in the body. The MTHFR mutation has presumably upset the balance and compensatory mechanisms are in place. Fish oil (omega-3 EPA) should not be taken on its own. You need GLA (omega-6)in an estimated ratio of one part GLA to eight parts EPA. This may counteract the inflammation, although that is a complicated issue and could be also related to thiamine deficiency. You described “white tongue” and that suggests to me that you have a yeast infection. Yeast is an opportunist organism as indeed is c-diff. These organisms recognize that the immune mechanism is compromised. They seize their opportunity at your expense. You have eosinophilic esophagitis (EOE) and I suggest that you find the post on this website in the research section that reports thiamine deficiency as a cause of EOE in a single case. A low oxalate diet is probably not necessary if you treat the thiamine deficiency adequately. The injections should help to start the ball rolling but you will need to keep this up as a supplement. I suggest that you obtain Allithiamine that you can buy from Ecological Formulas in California. We know that this crosses the blood brain barrier whereas Benfotiamine does not and you must also be aware that the mechanisms that produce this colossal multitude of symptoms is closely related to energy metabolism in the brain.

  11. I am a 48 year old female who has had so many health issues that I feel keep getting treated incorrectly. I have had systemic inflammation for years that the doctors just want to give me diuretics. I have said I feel it is something else. I did the 23andme testing and am homozygous for MTHFR 1298a and have been supplementing with methyl folate and hydroxyb12 , p5p, magnesium, d3, fish oil, lysine and arginine. I finally got a doctor to address my insatiable appetite since age 16. I am always hungry. My spectra cell showed insulin resistance so she put me on metformin 500mg one pill a day which I just started two months ago. It seems to help some but I have been complaining of white tongue and metal taste in mouth. My GI Doctor says I have EGE my eosinophils were through the roof and I have had 2 cases of c-diff in past 3 years. I am back to eating food now but was o. A elemental diet over the summer 2015. Not fun! So I just got my tests back and it showed a Thiamine deficiency which brings me here. I eat a low/med oxylate diet and i go today for my first shot of B1 of a series of three the doctor stated. Yesterday I did buy mega benfotMine and today is day two of that as well. I have orthostatic hypotension as well. I am wondering if this has been the cause of all or most of my medical issues and can something as simple as thiamine help heal me finally. I also am airborne anaphylactic to latex and have many environmental allergies and good sensitivities. Wow! Thank you and advice on dosage and how often I should retest labs etc would be so helpful.

    1. Your comment “insatiable appetite since age 16” caught my eye bc I just finished a book — DUMPING IRON by P D Mangan — in which he claims, among many other fascinating things, that excess iron makes us hungry. I wonder if you’ve ever looked into iron overload as a possibility?

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